I cannot handle my health anymore

This is long as I feel like I just need to vent everything bc it’s overwhelming me right now and I can’t handle it all. I’m on my phone sorry if the format is weird.

I don’t even know if this is comprehendible or not I’m just breaking down. TW it’s a lot

I’m 18. 18 years old. I’ve been sick my whole life, I’ve never known what it’s like to be healthy and I’m constantly grieving a life I’ve never had.

At 2 I started having absent seizures, then was diagnosed with the worst case of chiari malformation my chiari specialist had ever seen, had the surgery at 4, and my seizures mostly went away. Ive never been allowed to play sports as i dont have part of my skull, i cant see fireworks because they cause severe headaches and pressure in my head, i cant go on roller coasters, or anything thats too fast. I was in so much pain when i was 2-4 before my surgery they thought i was mute and i was in speech therapy to learn how to talk properly all of elementary school because i didn’t talk during the years i was supposed to learn how to as even the act of talking hurt too much.

Between the ages of 2-10 I was going through multiple forms of severe horrific trauma that’s left me severely traumatized, I have constant nightmares, I was unofficially diagnosed with bad bpd at the age of 16. I’ve gone to the mental hospital 6 times in the past 10 years.

When I was 13/14 I was in a car accident, very small one but I had gotten whiplash or I thought, which caused severe headaches, light sensitivity, I had a seizure (again, it was put down as an epileptic seizure), I was passing out, throwing up. I was told I had a herniated disc but it wasn’t as bad as my symptoms so I was sent to multiple other doctors who didn’t know until a rheumatologist told me I have Ehlers danlos syndrome when I was 15. Since then it’s all went down hill.

My diagnosis’s consists of, bpd, bipolar 1 with psychotic features, anxiety, social anxiety, severe ptsd, gender dysphoria in adolescence and adult (I’m trans), suicidal ideation, Tourette’s syndrome, chiari malformation, Bilateral occipital neuralgia, iron deficiency, gastroparesis, ehlers danlos syndrome,Amplified musculoskeletal pain syndrome, pots, Dysphagia unspecified type, asthma, obstructed sleep apnea, some sort of sleep wake disorder (waiting on a sleep study) and I’m currently being sent to a pain clinic because my doctor doesn’t know what to do with me anymore.

I take over 20 meds per day, have to use my inhaler 4 times a day, have a cane and two forearm canes which do nothing. I have choose either shoulder pain and slightly less leg pain or leg pain

The issue that is killing me right now is my legs and nobody knows what wrong with them.

I cannot walk. When I walk longer than 5 minutes my legs (mostly my right leg) starts to hurt, and not just regular hurt I mean deep bone pain that feels like my bone is breaking and tears start to well up in my eyes, then if I keep going it start to go numb everywhere but where it hurts (which is the worst part because I want the pain to be numbed too) and then I straight up just cannot move my ankle, I start limping because I can’t walk properly and then if I continue walking which at this point I find a way to stop walking, my leg just gives out because I can’t move or feel my knee anymore either, where my ankle bone is turns a dark red/purple and my leg feels hard to the touch.

My boyfriend gives me massages and everywhere he touches he feels so much tension, he sat there rubbing my feet for what felt like forever for each foot and he still couldn’t get it all out. yet when I stood up i genuinely almost started crying because I didn’t know you weren’t supposed to feel like you’re just standing on straight bone and the soles of your feet are actually soft.

Currently my heart has just been fucked up too apparently, my doctor diagnosed me with pots, I’ve been getting frequent heart pain that makes me fall to the floor clutching my heart because it feels like I’m having a heart attack, my heart rate goes over 120-150 doing normal tasks, it went up to 170 by just taking a shower, I use my boyfriends Apple Watch and have various pictures after doing normal tasks of it being extremely high, I can’t stand up without being dizzy or things going black, I can’t bend down and get back up without feeling the same way. My boyfriend loves to listen to my heart because he’s terrified I’m going to die and has mentioned hearing constant premature beats. I’m currently wearing a heart monitor it’s been almost two weeks and I’m counting down the days because I have a really bad adhesive allergy and my skin has started blistering and peeling off anytime I replace the sticky part which thankfully they gave me a bunch so I can take it off to let it breathe and feel a bit better. Also seems small but forgot to mention I have an extra artery in my heart, nothing too concerning my doctor said it’s small and doesn’t matter much right now.

I can’t do anything without heart and/or bone pain, and half the time if I’m doing something my body just stops and my hands stop working making me drop whatever is in my hand.

I’m constantly exhausted yet barely can go to sleep because I’ve genuinely never felt my body relax, getting out of bed feels like an impossible task and walking feels like I’m running a marathon with no training. And trying to be normal and live with the same energy as my boyfriend is just so incredibly exhausting but I constantly ask for breaks and to sit down, or to walk slower, or wait so I can use my inhaler, or some sort of slowing him down just makes me feel like such a burden
I mean the man is basically my caretaker at this point, he constantly says I’m not a burden but he is in control of my medication because nobody trusts me not to try to od again, and he constantly puts me on suicide watch which is where he puts all my meds but enough for two days in the lock box with my other meds and I have to let him know after the two days that I need more for the next two days because he doesn’t trust that I won’t do something, and he knows my health better than me. I know I told him everything when we got together, I was very open about the fact that I’m mentally unwell but I’m in therapy and bettering myself, that I have significant trauma from past relationships, and that I’m chronically ill but I always feel like I’m too much to love and I’m too much of a burden.

Besides that little rant not only is life exhausting to live especially because I turned 18 in may and I’ve gotten multiple new doctors and have at least 3 doctors appointments a week that I have to take the bus do or do over telehealth, this is the first week I only had one appointment for the whole week in like a month but it’s so depressing watching each part of my body fail and hear how everyone in my life has completely accepted my death because nobody thinks I’ll live past 20.

to hear the people you love the most telling you the only way they can cope with looking at you Is accepting that you’re going to die soon is a type of feeling I don’t wish on anyone.

I’m tired, I don’t know what’s wrong with me because nobody can tell me why I’m in this much pain and no pain medicines work to the point the doctor that is referring me to a pain clinic tried so hard to find a way to get insurance to approve opioids.

I DON’T WANT OPIOIDS I WANT A NORMAL LIFE.
I don’t wanna be like my dad I can’t I won’t do anything stronger than weed i don’t care if the pain kills me I won’t do fucking opioids.

I just wanna cry. I just wanna be okay. Why can’t I just be healthy. I feel like I’m dying slowly and even though I’m terrified of death I’m so ready to not be in any pain anymore I feel like it’s for the best. For everyone I know.

I know nobody will read this and nobody will comment but at least it was cathartic to put it out there.